I’m sorry you’re not feeling any better! But this statement is absolutely false. There are lots of recovery stories where people are not sure what made them better. They just started to improve and stayed that way. The people who claimed to have improved by taking supplements or drugs tend to get more attention, because it seems like a repeatable “quick fix” that seems easier than actually making substantial lifestyle changes.
I feel that you’re also repeating a common misconception about the idea of “doing nothing”. It seems like a lot of people think “doing something” can only be to self-experiment with drugs or supplements. This is a very self-limiting and medically risky belief. This mode of thinking can drive people towards riskier and riskier interventions that can introduce new or worsening side effects. Of course, people are responsible for their own choices, and I understand why people might want to experiment, but I think we need to broaden the definition of what “doing something” really is. For example:
- Support research. Imagine having a scientifically validated cure, but then being too messed up from arimidex (or something like that) to take advantage of it.
- Report side effects to the FDA. Attention from the medical establishment lowers the stigma, increases awareness, and unlocks funding for research.
- Organize your life to better cope with PFS. We might in this situation for quite a while. Before getting this disease, perhaps you wanted to start a company, or make it on Wall Street, or get that Vice President title. I’m sorry, but the reality is that you probably can’t do that right now. You have to your plans to something that works with the disease. It’s painful, but it will reduce stress over time. And you won’t be constantly torturing yourself about how you’re not being more successful at school/work, etc.
- Improve your diet. This is not easy. Diet is highly individual – many people have gut issues that makes it even trickier to navigate. You also have to learn to cook healthy food for yourself that you also enjoy eating. This is a big task.
- Improve your sleep. Getting 8 hours every night is hard enough. There are a lot of things to improve on top of that – sleep environment, restfulness, regularity. You might even want to get a sleep study done to see how you can improve.
- Exercise. Very difficult to get right. Some PFSers also get worse with intense exercise, so you have to find your ideal sweet spot to start with. There are tons of exercise techniques to navigate through and evaluate. Finding one you like and that gives results can take years.
I’m sorry if I’m singling you out @Finarb – I understand where you’re coming from, I really do. I’m writing this because I see so many people who express similar thoughts, and I wanted to leave this here in the hope that people might start pulling on some other levers than the “which drug/supplement will cure me”-lever. I wish you the best of luck!